http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=637
Thu, 20 Sep 2007 18:12:07 +0000PunBBhttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=3695#p3695
Hey Robyn, I'm not sure how similar our situations are, but I'll share this with you in case it helps. Hope so. My husband, Charlie, age 52 diagnosed with cc end of May this year. Finished 14 weeks of Gemzar this month. Went for 2nd opinion at UNC. Case presented to tumor board and a surgeon felt like he could do surgery. One lobe is just full of tumors and the other we think is clear. MRI, laparoscopy and now surgeon wants to do embolization (cut off blood supply to bad lobe so it will shrink and "die" and allow good lobe to enlarge). 4 to 6 weeks after that, surgeon will remove the bad lobe. Surgery possibly in Dec.?? We have been right there on the same roller coaster and know how you feel. We were getting ready to do SIR spheres with Dr. Kennedy (if our insurance would pay) until this came up. Surgery does seem to be the best option for Charlie right now. We haven't gotten that far yet, but it's looking promising. I hope and pray the same for you and your husband. It almost seems like it takes that one aggressive surgeon who thinks he can do something to help - otherwise, it's just 6 months to a year. That's what we were told anyway. Chemo made Charlie feel much better at first and the tumors didn't grow anymore, but towards the end of chemo, it was really taking a toll on him (fatigue, low white blood counts, etc.). Don't think it would have been worth it to continue for his quality of life. So thankful this surgeon doesn't want to just "write him off". We personally feel that some doctors just give up when they hear you have cc. Please update us on your situation. Pray things are going well for you and your husband.

Carol

]]>Thu, 20 Sep 2007 18:12:07 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=3695#p3695http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=3690#p3690
Most of the time surgery is the best hope for longevity with this disease. If it is possible please give it careful consideration. I'd also consider consulting with a surgeon with as much experience as possible with CC.

Once they remove the tumor and usually common bile duct, perhaps part of liver, and maybe even some of portal vein etc they are able to sew a small bile duct fron the liver directly to the intestine to maintain a flow of bile.

Best wishes for a successful resection with clear margins!-Peter

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My tumor is not as big as your husband's, but is still too big for surgery. I'm having radiation and chemo (Xeloda) treatments. Keep fighting! Have courage! Don't give up!]]>Wed, 19 Sep 2007 14:34:39 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=3674#p3674http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=2851#p2851
Robyn- if they decide the tumor is too big for re section- ask about sir spehres or thera speheres- it is a type of radiation that shrinks the tumors to make them re sectionalable go to sirtex.com]]>Fri, 13 Jul 2007 17:12:57 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=2851#p2851http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=2849#p2849
Hi Robyn,

I know you asked if anyone has experienced large liver resection and I can tell you my husbands experience but unfortunately, it was not good in the end. Ken had been having some slight abd discomfort- that he had ever mentioned to me. One morning he woke with severe Left sided abd pain. I assumed it was a kidney stone because he had one in the past. The doctor ordered an Ultrasound. The left side was clean but very suspicious looking on the right. CT, PET scans,bloodwork all followed. The surgeon here in Reno was not about to touch Ken so we were referred to Dr Esquivel at Stanford. Biopsy was done- confirmed CC. Resection was scheduled in 2 weeks- He was in surgery for over 8 hours. Dr came out afterwards to inform us that the team had considered just closing Ken up and letting him go home but they took a chance because of his age (46). He had a softball size tumor that was in his liver and gallbladder and what he called 2 "daughter" tumors. Recovery went very well. They didn't know what to do with him after that. Trial of Gemzar for 6 months- tolerated that pretty well. Had afollow up CT before last chemo dose and found the CC had returned. Ken decided the chemo was not a choice for him to continue. The docs at Stanford decided to try thera-spheres. Went great- 6 week follow up CLEAR! Very hopeful! 12 week follow up- still clear where the tumors were radiated but new ones had formed. They were unable to radiate any more of his liver. Told us Ken had less than 6 months. It was only 4 months but Ken was able to grant a wish for a patient of Make-A-Wish. A 9 yr old named Jared had leukemia and always wanted to go fishing on a big boat. So, Ken with his CA and Jared with his had a week up at Eagle Lake and had a blast! Ken passed away 12/27/06 and Jared is in remission!

My best wishes go out to you and your family.Terri

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My husband was diagnosed with cc in Jan. Since then we have been on the cancer roller coaster somewhere between hope and despair most of the time. He did chemo, knowing it does not have good numbers with Cholangiocarcinoma. Tumor too big for radiation at 15 cm. The thing is huge, we call him Bob. The oncologist sent him home basically saying enjoy til you are symptomatic. So he feels great, now with no chemo !!! We went to the University of Wa. and basically got the same news, just palliative treatment at best. Then the doc called him afternoon of the 4th (didnt know they worked holiday) and said he had been studying his scans and thot ressection may be possible and wanted to submit him to the board of surgeons. They called and scheduled an appt to see him on Tues.It has boiled down to all or nothing. Very scary but if he is rejected then we feel we have lost everything. To make matters worse he is not taking advantage of every moment of every day, instead is mad, bitter, cant blame him.I have alot of questions, maybe more by Tues if it looks like a go. Even if they get Bob removed, what about the bile ducts themselves? If the cancer originates from that, then he cannot be cancer free....and chemo still doesnt have much effect? I m wondering if the surjery is successful, what does that mean for months or years of quality life. How bad is the recovery, how risky, etc. And even questions on nutrition since the liver would be regenerating. I know I should wait until we see them on Tues but I am not one to wait well, and education is power, or at least emotionally helpful. Are there any people out there who have had a large tumor ressected and if so what were their experiences??Any info is helpful as we are all in this together it seems. thanks robyn]]>Fri, 13 Jul 2007 16:18:59 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=2840#p2840